12-Year-Old Faces Rare Irreversible Condition That Is Slowly Turning His Body To Stone

Aug 02, 2018 by apost team

Stone statues and sculptures have been made from the likeness of many famous people throughout history. It’s the ultimate show of respect or admiration. However, it’s doubtful that any would want to literally be that stone statue, which is what’s happening to 12-year-old Jaiden Rogers. And, as it’s all happening, his mom is facing her own health battles.

No parent wants to be faced with outliving their child. It’s an unimaginable pain that lacks any comparison. Natalie and Tim Rogers, of Alamosa, Colorado, face this fear daily as they watch their son, Jaiden, battle for his life against a condition that turns his skin stone-hard.

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Jaiden was born to a teen mom. He was only two when it was decided that his birth family could no longer care for him. Natalie and Tim Rogers stepped in and adopted him. Jaiden lacked communication and social skills, and was eventually diagnosed with autism when he was five-years-old. The Rogers family dove in to teaching him how to speak, play, and communicate. Their focus was on continually strengthening their family unit.

Their health battles were far from over, however.

Jaiden was six-years-old when his dad, Tim, noticed a hardened spot on Jaiden’s thigh. The Rogers family would wait until 2013 to get a diagnosis of stiff skin syndrome from a biopsy. Tim describes it as a very confusing time and has stated that they just couldn’t believe the lack of answers and not being able to find anyone else with the condition.

The hits just kept coming for the Rogers family. In 2016, Natalie was diagnosed with Friedreich’s Ataxia, which causes progressive nerve system damage that can lead to heart disease, scoliosis, diabetes, and fatality.

Only a couple dozen people have been diagnosed with stiff skin syndrome since it was first reported in 1971, making it one of the rarest syndromes in existence. Jaiden is one of those few.

There’s no cure. The condition causes the body to irreversibly harden. Natalie describes Jaiden’s skin as being like touching stone or tapping on a countertop. It quickly spread from Jaiden’s thigh to his back, stomach, and hips. The result is tremendous muscle and joint pain that requires Jaiden to take heavy pain medication. He often sleeps for up to 18 hours each day.

Now, the hardening is spreading to his chest. The result is airway restriction and difficulty breathing as the condition hardens his lung and chest cavity. The fatality of the condition is this type of hardening that restricts organ function.

The Rogers family has taken out three mortgages on their home and exhausted Tim’s retirement to treat Jaiden’s condition. At their financial limit, they’ve created a GoFundMe page to continue onward with Jaiden’s costly treatment.

It takes four hours for the family to get to Jaiden’s doctors at the Children’s Hospital in Denver, Colorado. They take the trip once each month and stay several days consulting with doctors. Because the condition’s effects are irreversible, the goal is to stop or at least slow the progression of it. Jaiden is undergoing chemo, and it’s working this far to slow down the progression somewhat.

Despite all the uncertainty, Natalie‘s health condition, and having exhausted all their personal finances, Natalie and Tim remain hopeful for a cure and committed to giving Jaiden a future.

This family could most certainly use all the support and efforts to raise awareness they can get. Have you heard of stiff skin syndrome? Did you know about this family’s struggles with it? Do you have questions, advice, or words of encouragement you’d like to offer? Feel free to leave a comment.